All posts tagged Down Syndrome

Every morning as I sip my coffee, I peruse the headlines on the internet and scan a few of the articles that interest me. Last week I came upon an article that made me wish I had slept an extra twenty minutes and skipped the internet.

On the splash page of AOL there was a headline, “Woman writes outrageously cruel letter to mom of autistic boy.” The article showed the anonymous letter written about Max, a thirteen year old boy with autism. I’ll spare you the details, but “outrageously cruel” doesn’t begin to describe how reprehensible this letter was.

As I read the letter, I thought of my nephew Adam. Adam has Down syndrome and is autistic. He entered our lives twenty-five years ago, a frail little bundle with huge blueberry eyes that searched mine as I held him for the first time. His heart was so weak that drinking from his bottle exhausted him, requiring open heart surgery before he was a year old. Undoubtedly, his special needs were overwhelming to his birth parents, and they released him for adoption shortly after his birth. It took no time at all for him to claim his spot in the family…and in our hearts.

It’s Saturday, and I visit my sister at her farmhouse. Adam greets me with a grunt and a hug. He can only say a few words, but despite severe hearing loss in both ears, he understands almost everything that is spoken. When he sees me approaching the front door, he usually flings it open and runs away, but today he stays long enough to give me a quick hug and an air kiss. He hovers in the kitchen, grinding his teeth and shifting his weight from one foot to the other until my brother-in-law tells him it’s time to take the trash to the dump. He separates the bottles and cans from the paper goods and carries them to the work shop. And on Saturday, he helps his dad take the family’s refuse to the dump. It may easily be the only chore he does, but he does it without fail.

After returning from their errand, my brother-in-law resumes working on the outbuilding he is constructing for his tractor. Adam sits in a chair at the edge of the construction site, swaying to Toby Keith on the CD player and watching the cars and trucks pass by the house.

You may read this and wonder why God would put such an unfortunate human being on this earth. While it is true that Adam will not ever support himself, or drive a car, or cook his own meals, he adds to his family in ways that cannot be measured.

Adam teaches us perseverance. He hates wrinkled socks and whines and fusses if they are not perfectly smooth. Over and over, he pulls them off his feet and pulls them to his knees again in an attempt to calm his overloaded sensory system. Finally, when they are adjusted to his satisfaction, he can move on. How often do we slop together a job just to get it done, or give up when a task cannot be completed in a few moments?

Adam teaches us to be non-judgmental. Adam doesn’t size up people’s appearance. He doesn’t care how well-educated they are, or if what job they have, or how much money they have. He teaches us to let go of expectations and take people at face value, with no bias or prejudice. He doesn’t realize what a powerful lesson that is. But I do.

Adam teaches us to take time and laugh. He has a little game which nobody quite understands. Sitting next to me, he pinches his fingers together, touches his forehead between his eyebrows and then reaches out to touch mine in the same place. Back and forth, he goes, chuckling as if it is the funniest thing in the world. His laughter is contagious. I laugh with him, and my day is immediately better.

Adam teaches us unconditional love. During most of Adam’s life, my mother lived in the farmhouse with my sister and her husband. She was an integral part of Adam’s life and he adored her. When I visited my mother in her room, Adam would burst through the door and plop himself on her bed or on the floor in front of her television set. He did not interrupt. He did not ask for anything. He just wanted to be near her.

My mother loved Adam as much as he loved her. Night after night, Adam brought his pajamas to her room so she could help him get ready for bed. Helping him dress, she would evoke from him the only sentence I have ever heard him say. Signing at the same time, she would start him off, “Adam, I…”

Adam would sign back and yell to complete the sentence, “Love..you!”

During Mom’s last days at the Hospice House, my nephew Jason brought Adam by for a visit. He ran into the room, and plopped himself down in the recliner next to Mom’s bed. He was clearly confused by the surroundings, but he knew his Grammie was there. After a short visit, Jason said it was time to leave. Mom kissed Adam and started the routine, “Adam, I…”

“Love… you!” belted Adam. It was the last time he spoke to her.

For days after Mom passed away, Adam would stand at the door of her empty room, pajamas in hand, waiting for his beloved Grammie to help him get ready for bed. His silence spoke the emptiness that we all felt.

To the person who wrote that nasty letter on the internet, I am sorry. I am sorry you are so biased with your own prejudice that you miss out on the value of those different from you. I am sorry you are so filled with hate that you miss out on love. And I am sorry you will never know the wonderful lessons that Adam and those like him can teach. It is you who suffers most.

Joshua is my twenty-two year old nephew. When he joined our family, he was only a few days old- a chubby little bundle with brown wavy hair and eyes like deep pools of melted chocolate. When his birth parents discovered that Joshua had Down syndrome, they decided that they were unable to take care of him, and gave him up for adoption. My sister Martha-Jean and her husband Robert eagerly grafted him into our family, where he took his place as their youngest son.

Joshua is closest in age to my daughter Elizabeth, and during their growing years, they spent hours and hours together. They made up synchronized swimming routines in the pool. They caught grasshoppers in the field. They played games of hide and seek in my sister’s old farm-house, scrambling behind doors or inside closets so they wouldn’t be found. If Elizabeth suggested a game, Joshua would respond with undying enthusiasm, and if Joshua suggested and adventure, Elizabeth rarely refused.

They are grown now, and if you stole a casual glance at them, you would think they are polar opposites. Elizabeth is tall and willowy, with huge eyes fringed by dark full lashes. Joshua is short and stout, his hair clipped short and his eyes hidden behind thick glasses. Elizabeth studied at Oxford. Joshua reads at an elementary school level. Elizabeth likes to be in motion- running, boarding, swimming. Joshua likes to listen to music, watch television, and play video games.

Last November, our families got together at Thanksgiving, and Elizabeth was home for the first time in several years. She wanted to go for a walk in the snow, to visit her grandparents’ graves that sit in a small family plot on my sister’s property. To everyone’s surprise, Elizabeth cajoled Joshua into going with her. He doesn’t usually like to go out in the cold, but he pulled on a pair of boots and a hat, and together they walked across the field. They took snap shots of each other, played on the rope swing and returned to the house. While walking through the field, Joshua made Elizabeth promise that she would visit again on Christmas.

A couple of weeks later, Joshua became ill with a cough, and within a few days developed pneumonia. His condition worsened, and he was moved into ICU at the hospital. I went to visit him, and sat by his side, watching him struggle to breathe through the oxygen mask. He took my hand in his stubby fingers, and eyes wide, gasped, “Am I going to die like Gramma?”

“No, Josh, not now. You’re not going to die. You just rest and you’ll get better.” I fought back tears and smiled, hoping that I could convince him…and myself…that this was true.

A few hours later, Joshua went into respiratory arrest, and was intubated. For more than two weeks a ventilator breathed for him as he hovered between life and death. Our family huddled together in prayer until a few days after Christmas, Joshua began to get well.

Elizabeth and I visited him several days after he returned home from the hospital. His voice was hoarse and gravely from the ventilator, and he shook as he leaned on a walker to travel from his bed to a nearby chair. He weakly smiled when Elizabeth playfully teased him, and she promised that as soon as he was stronger, she’d visit again. A few weeks later, she gleefully accepted a temporary assignment to work as Joshua’s aid. Four days a week, she and Joshua spend the day together. They walk on a treadmill and lift weights. They go bowling. They swim. And each day, Joshua gets a little stronger.

You might think that the person who benefits most from this relationship is Joshua, but that is not necessarily the case. For as much as Joshua has a loving companion who encourages him to move and strengthen his body, Elizabeth has a companion who unconditionally accepts and loves her. She comes home at the end of the day and flops down on the couch beside me. She looks happier than I’ve seen her in months. Her muscles ache from working out, but her eyes shine as she tells me about her day.

“Josh swims to me from the opposite side of the pool and then climbs on my back. I drag him back to the other side and then we do it over and over again. It’s exhausting, but I love it,” she grins. “You know, Joshua doesn’t have a mean bone in his body,” she muses. “He talks to everyone we encounter. And he loves to get silly, just like any of my other friends.”

I picture Josh’s smiling eyes squinting behind his glasses.

“And,” she continues, “he’s very perceptive. He listens and remembers. And when we’re out, he tells everyone who I am, like he’s proud of me.”

“Of course,” she giggles, “If I get too bossy, he reminds me that I’m his cousin, not his mother.”

I look at my daughter and imagine her in the pool with Joshua. I’m reminded of the water ballets they used to perform- his short round body swimming in sync with her long lean one. It makes me smile. They make me smile.

And I realize something. When Joshua and Elizabeth are together, it is not about their strengths, or weaknesses, or abilities, or disabilities. It is about two cousins who love each other.

Joshua’s birth parents had no idea who they were giving up for adoption. I don’t know who they are, or where they live. I don’t know if they tearfully tucked him into a soft flannel blanket and kissed him goodbye, or if they even held him after he was born. I don’t know if they were young and poor or old and wealthy or why they didn’t feel that they could keep their newborn. But I do know If I could speak to them I would say thank you. Thank you for giving us your gift. Thank you for Joshua.